Nina has been with us for a year. She is just tight tight tight. Although she did make progress after arriving home, she is not doing any better. Actually, we feel like she is regressing once again. And this is my frustration, I cannot find what motivates her! She has little to no desire to ever walk or be independent. When I tell her we are going to stretch she says no, when I tell her we do this so that someday she can walk, she tells me it is okay, she just wants a wheelchair. Anything having to do with her mobility is a fight and she has no motivation or desire to do this! Is it a result of her CP? Is it a result of being institutionalized for almost 4 years and an emotional thing? Well, we don't know!
So I am going to the experts on Cerebral Palsy. No, not the doctors. Yes, they are experts on the medical field, but, they are not the ones raising and doing life with the kids they serve. Not the ones that actually "get" what it is like to parent our children. They are amazing at what they do, but their help can be limited unless they too have walked this road.
I am calling all mom with kids with Cerebral palsy. I need your help! Do you have a blog? Let me know so I can learn from your experience. Do you have advice? I am open to all advice. Do you have words of encouragement? I can use them right now!
I am not giving up on Nina, and it breaks my heart to see that she seems to be giving up on herself!
I want to know what has worked for you. From therapy to surgeries, to songs that motivate your child!
I'm not an Expert, but I just want to encourage you. I think the most important Healing thing you can do for Nina is to Love, Love, Love her!! Don't allow your frustrations to get in the way of Love. She will respond to you!
ReplyDeleteI can guarantee that she will not do what she needs to do if she senses your frustration. She's done that already! For all of the days she spent under the care of nannies who likely often became frustrated and angry with her. It will take a long time for her heart and mind to recover from the abuse she tells you about.
I also think this weather makes us all feel lazy and not wanting to do the things we need to do.
Most of all, if you take anything from my comments, I hope you get that I CARE about You and you children. I LOVE that you saved Nina's life! I LOVE that you have the heart of Jesus! And, I LOVE You!!
I don't have any experience with CP. I just wanted to tell you that I know what you're feeling. When we had Eon (w/Ds), there was this whole community to welcome & support us. I can get answers for any question from experienced moms 24/7.
ReplyDeleteBut we also have a child with an anxiety disorder. He has behavioral problems and mood swings. He is 20x more challenging to parent than Eon and we have zero support. It is so lonely and frustrating and I feel powerless to help him.
I hope you find the support you need. Hugs!
Hugs, girlie! I hope you can find the support that you need ... there has to be a whole CP network out there, just like our DS network, no? Got your fb message ... off to answer ... :)
ReplyDeleteI think i am going to take a stab at this
ReplyDeletefirst off i am not a mom but i am a 19 year old with CP.
For me I am lazy when it comes to things that are hard for me to do. Cooking is a challge for me so I do not cook meals and stuff. I do not feel coftable cutting so I rip the food ,waffles bread with my hands.
I do not know if all people with CP are like this but I can only speak for myself. as far as motivation i usaly will pay attention. for example if an adult says "AZ if you do not do( ) No tv or something I will have my mom try to anser this one when she has a chance too
hugs to everyone in your family
AZ
PS Unfortunately there is no support groups for CP. For Down Syndrome a ton but for CP almost none and there is no Buddy Walk for CP. You probably know this already having her for a year BTW march is CP awareness month
http://www.lovethatmax.com/
ReplyDeletehttp://www.terriblepalsy.com/
ReplyDeletehttp://www.rachelcoleman.com/2008/07/15/strong-enough-to-be-your-mom/
ReplyDeleteMy advice: Just give it time and develop a strategy with her therapist.
ReplyDeleteYou need to examine this from a psychological standpoint.
Prior to her adoption, Nina was told "you can't" over and over and over. She was led to believe that she was incapable; that's a really hard belief to overcome, even for an adult!
From your writing, it's clear to me that this is a very deeply seeded belief in Nina. It will take time for her to actually believe that she's capable. There's a term for this; it's called "learned helplessness." (Google it and you'll get tons of information about this psychological state.)
Further, you have to remember that in an orphanage, the more disabled kids tend to get more attention out of necessity (i.e. you have to carry a child who can't walk, feed a child who can't feed himself, etc., so that's extra contact/attention.) So for a majority of her life, Nina's disability/inability has resulted in a little bit of extra attention/contact -- that's huge for a child who's seriously deprived of love and attention. In short, she believes that the effects of her CP result in extra attention. You may even have a situation where she believes that you love her and pay attention to her *because* of her CP. Her beliefs and expectations of the world may be **extremely** skewed -- more so than you can ever imagine -- due to her time in the orphanage.
In short, you're asking Nina to change her deeply seeded beliefs and expectations of how the world works. That's going to take time -- a long time. Imagine that tomorrow, someone turned off the world's gravity. You'd need to alter all of your beliefs and expectations of how the world works; beliefs and expectations that you've held for your entire life. Imagine? It would take a loooong time to completely eliminate those gravity-related beliefs and expectations, especially because gravity is such an integral part of everyday life. That's what you're asking of Nina.
In short, you need to emphasize that she is capable and able -- I know you already do this.
In addition, you need to really reward her for her efforts to become mobile and able. The reward needs to outweigh the attention and any other benefits associated with her "helplessness." (I don't mean to imply that Nina is helpless; I just mean in need of assistance.)
Does Nina see a therapist? If not, I'd definitely recommend it. These issues are going to be extremely difficult to overcome. Nina's mental/emotional struggle is apt to be more difficult than the physical struggle when it comes to becoming mobile and more self-sufficient. She's going to need a very specific type of support and a psychologist can help you in this regard. They can identify the precise nature of her issues, provide support and the psychologist can equip the entire family with a strategy that will help Nina.
You'll need to work hand-in-hand with the psychologist. I don't think she'll progress physically until she can progress emotionally/mentally.
Hi Ellen, My name is janet I am the grandmother to beautiful Hailey. I share Haileys life with C.P. on my blog www.janetharrold.blogspot.com
ReplyDeleteI think it would benefit you (if you do not belong already) to be a fan on http://www.facebook.com/album.php?profile=1&id=190913374032
I write weekly content on Exceptional Family T.V. their fb page has over 3500 fans of people who have children with disabilities a lot of the fans have children with C.P., Downs, Autism etc. The Founders of EFTV are also a young couple who have a 3 year old son Zak with C.P. I know you could find help there also they also have a young girl (she is approx 24 )who writes a blog for them who has C.P. She is from Australia but a lot of her content is about the tightness and struggles with C.P. I know she does alot of videos etc. I am sure that Sammy could tell you alot about how Nina might be feeling. I really encourage you check in with EFTV regularly they have been my main source of inspiration and resources.Good luck and visit my blog, most of my blogroll are from parents of children with C.P.
http://andrea-justhangon.blogspot.com/
ReplyDeleteShe has twins with CP as well as two other daughters and is a strong Christian. I think you'll enjoy the blog.
Just an outsider looking in but the progress she has made in only one year looks phenomenal to me. ;)
ReplyDeleteI wouldn't doubt for one minute that TONS of her motivation issues stem from her 4 years in that institution. I'm sure she is still in survival/recovery mode and learning to become independent and more mobile are just not at the top of her list. Yet!!
I'll bet as she gains confidence in her place in the family (the sister post proves she is doing just that!) and continues to adjust to the unbelievably huge life/culture change, that little by little, progress with her CP will follow.
I have LOVED reading the Stumbo Family Story and I'm positive the challenges you are facing now are just a chapter in your adventure.
Hang in there!!!
Hello!
ReplyDeleteI am no expert but I think you can try to find out what Nina is good at and enourage/help her to develop that area of talents/gifts. I am from Taiwan and goes to a grad school here. I have an American classmate who also suffers from CP. And I have to say that he is the most hard-working/probably gifted language learner I have ever encountered. He(an English native speaker) knows more about classic Chinese literature than I do(shme on me!). He speaks Chinese fluently(which means I can chat with him at a speed I normally chat with my Taiwanese classmates without having to slow down for his sake), understands ancient Greek and at least two other European languages. He is just so amazing. And I know he is proud of his language abilities(well, he should be!!). May God bless Nina and your efforts to raise her! --Diane